What's next after chemo & Mast?

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LezlieB
LezlieB Member Posts: 14
edited June 2014 in IBC (Inflammatory Breast Cancer)

I'm wondering what's next in treatment....I've had the TAC chemo, then switched to Herceptin every three weeks, (Just plain Herceptin with nothing else...also wondering about that since it seems like so many here are getting Herceptin in combination with something else)
Bi-lateral Mastectomy on Jan 8, and have an appointment with the onc this week.
I have a list of questions for her, the biggest one is what's next. So far Radiation hasn't been mentioned and I figured that since I had a bilateral mast none would be needed....but I've seen here that most everyone with IBC has rads after the Mast, some even mentioned Rads twice a day.
Guess I'm feeling like I need to be pro active and make sure my onc doesn't think that now we can treat this like any other BC and drop the ball in treatment. I had mets to liver and a couple nodes, cleared up with the TAC chemo, as of last PET in early November (Thank goodness!) but I sure want to do whatever it takes to prevent skin mets or anything else from cropping up.
I had DCIS in 2001 and had rads then both DCIS and IBC on the left breast, so would the previous rads prevent me from getting them now?
Just lots of questions and worries. I feel like I caught this pretty early, though with the mets, tiny as they were, it seems it wasn't quite as early as I thought.
I'm learning so much here....before I didn't have any idea this was all that different from other kinds of breast cancer, just presented with different symptoms that made chemo necessary before the mastectomy....then I figured I'd be done and cancer would be gone for good.
Thanks for any advice or insight,

 Lezlie

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited February 2009

    Lezlie:

    If path report on lymph nodes come back positive normally another round of chemo is done.  As for your question about radiation I do not know I would call your radiation oncologist to find out what he/she thinks.

    Good luck with your onc appointment.

    Laura

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  • LezlieB
    LezlieB Member Posts: 14
    edited February 2009

    Thanks for the reply Laura.  So far I haven't been referred to a radiation oncologist...that might happen when I have my next appointment with my oncologist, but so far it's 7 months out from DX (this time) and no one's even mentioned me seeing a radiation oncologist.

    Definitly something I'll discuss with my regular onc.  Till I started reading all the posts here I just figured with a bilateral MX that radiation wasn't something that might be necessary.

     I have a big old list of questions for my appointment!

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  • lexi4
    lexi4 Member Posts: 1,074
    edited February 2009

    Hi Lezlie,

    I'm not sure about the radiation tx either. I would say yes, except for the fact that you had rads previously.  Maybe because you had such a great response to tx they are holding off on the rads. I hope that you get good clear answers at your next appt.

    Lexi

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  • desdemona222b
    desdemona222b Member Posts: 776
    edited February 2009

    I had DCIS in 2001 and had rads then both DCIS and IBC on the left breast, so would the previous rads prevent me from getting them now?

    Yes - you can't get the same area radiated more than once.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    Some women have had rads more than once. It depends on a couple of factor's if you can have them again.  One is how long since your last rad tx.  Most clinic want a lot of years in between rads.  Also have extensive your rads were. Now they don't aways do as extensive rads as just a few years ago. A doctor a UNC is doing a study on getting rads more than once.

    Flalady

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  • alabamawoman
    alabamawoman Member Posts: 1
    edited April 2009

    I had my 3rd PET scan on Feb 18th(all clear),i had 6 treatments of chemo,started taking Femara in October,saw my Onc.last week,everything was good....no radiation mentioned for me either My onc. is always reminding me i still have cancer,but everything is under control...Can i possibly think i can beat this without a recurrance and get completley well? Is it possible after being diagnosed with stage 3?

    Can it be this easy to have the surgery,take Femara for 5 years and hopefully the cancer can just disappear?

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  • NYCarol
    NYCarol Member Posts: 347
    edited March 2009

    If you are HER2 positve, you should be on Herceptin.  If your doc says no, I'd get a second opinion. 

    Good luck tomorrow!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    If you remember "ibcspouse" who has been a faithful poster here in the IBC threads, he needs you guys right now.

    Cam, his wife, had been NED since November.  Last week in a matter of hours, she developed mets to the skin!!!!!  They are leaving for Houston today to try and get accepted into a clinical trial at MD Anderson.  I dont know which trial, but evidently there is one that could offer her some hope.

    In case you are unaware, ibcspouse was unfairly banned for life from this message forum!  Those of you who know him, know that he could never do anything to deserve that!  BUT, you can find him here:  http://www.breastcanswers.com/bcforum/index.php and his new ID is "camsdh".

    If you guys could take a minute to visit the new forum, perhaps register and post to him in the IBC Forum, I know it would help him get through this very scary time.

    On ibcspouse's behalf, I thank you!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    Me too Gg08.  I posted on your thread and I thank you so much for starting it.  I have to say, right after I posted this here, I got nervous that I might get banned for it. 

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